How Do You Describe the Symptoms of ME/CFS to Others?

A question that I have toyed with for ages is how best to describe, to people who have never known serious sickness and are unfamiliar with ME/CFS, what it feels like to live with this illness. I have tried to express before to family and friends what the illness feels like, but always find myself coming up short, which is, of course, to some extent inevitable.

How do you, or would you, describe in a few sentences the symptoms of this illness to family and friends? I realize the presentation of ME/CFS differs somewhat in all of us, and that some symptoms may present strongly for some people while other symptoms present strongly for other people.

I think it's hard to explain and maybe I'm cynical but I've found that my attempts at explanation prove pretty useless. I guess if I had to explain I'd just tell people to think of when they've been really sick and had to stay home from work for at least a few days and just stayed in bed the whole time. And imagine feeling that level of sick, give or take some severity, every single day. And that explanation doesn't even get into PEM and the complications of that but it's a start I guess. Most people really don't understand PEM in my experience.

Imagine you've been on a massive bender - stayed up for 3 days straight and drunk gallons of alcohol - that's how i feel every morning when i wake up - especially if im not asleep by 11.
Imagine being on the tail end of flu every day, day in day out for years. Occasionally i have a few days where i feel somewhat normal, thats probably when you will see me and tell me i look great. Most of the time im happy and smile - but it doesnt mean i dont feel ill at the same time.

1. The pattern of symptoms is well known to those familiar with CFS, and I will not go into them here. For me, the most important diagnostic feature of this illness is the activity limitation. The patient with CFS is not able to do a normal amount of activity in a day because of "fatigue", whatever that is. It could be described as weakness, or sleepiness, or rubbery muscles or brain fog, or tiredness, but it limits the degree of overall activities. The other symptoms may be present but are not limiting the activity. For example, it is not the joint pain which prevents the CFS patient from activity, it is the fatigue.

2. And what is normal activity? In another study our office did with the help of friends in the CFIDS community, we asked healthy persons what they did in a normal day. All persons who considered themselves entirely well had at least 12 hours a day of upright activity. In other words they were "up and around" for half of the day, either work or some other activity. Patients with CFS have a limitation of this activity. Mild cases can only be "up and around" for 10 hours a day. This is a limitation because they used to be up and around from 7AM till 10PM, or 15 hours a day. Severe cases are "up and around" for 1 hour a day and that only with rest periods.

3. The next most important factor is orthostatic intolerance. This aspect of CFS was unknown to me until meeting with Dr. David Streeten, but now I see it as an essential for the diagnosis. Essentially orthostatic intolerance means that all symptoms are worse on being in the upright position. Walking, standing and even sitting are all upright activities. When lying down, most persons with CFS feel better, despite being bored out of their minds.

4. The chronicity of the symptoms is an equally important feature. Of the many patients I have seen, only a handful can say that they have a single day in the past year where they felt entirely well. Many persons say they have "good days", but they define a good day not by being well but by being improved over the average days. More severe patients may not even have single hours during the past year where they felt entirely well. The day to day persistence of the "sick" feeling is essential to the diagnosis.

5. And lastly I would emphasize the symptom severity fluctuation along with the variation of the worst symptom. The activity fluctuation may go from two hours a day in one month to four or five hours in another. But during this time different symptoms take the lead in being the most troublesome. Severe headaches for three weeks, followed by muscle pain for the next three. A month later the sore throat is there every day, and another month later the irritable bowel is acting up. Overall, all the symptoms seem to hang around, but they take turns leading the pack. It is the overall pattern of these symptoms that is important in making the diagnosis, not the most prominent symptom on a given day."

Thanks Ocean for that synopsis from Dr Bell - o particluarly like this part in section 5

Overall, all the symptoms seem to hang around, but they take turns leading the pack.

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This isn't something that gets discussed much, but it drives me crazy. I always seem to have one more domiannt symptom which makes treatment really hard because they rotate - one month i think i need to see a neuro - the next its replaced by a burning desire for some gut testing as that takes over as the predominant symptom. So hard to get my own head around, let alone describe to someone else.

Imagine getting lost in a desert and walking for a few days without food and water.

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...and when people see you and you tell them you have been in the dessert without food an water for a few days, they say - oh that's nothing, we have been in the desert without food and drink plenty of times...it is no big deal. So you tell them but, in addition, I also have not slept for the past three days - so they reply..well my aunt's brother's nephew once did not sleep for three days and anyway for someone who supposedly has been walking in the desert for three days without food, drink or sleep ...you look GREAT!

i usually dont talk about being ill alot...{other than on support groups of course{ but not to people in person i know becasue ..i had very bad experiences with "firends/coworkers" when i first got ill....so many dont belive in these illness and i felt crazy..

but to some of family...or if i were to meet someone ..i would describe it as many many symptoms/problems/illness maginfied...pain that is deep to the bone with little to no relief...go to bed exhausted wake up exhausted...feel like you have flu symptoms all the time...then theres all the other illness that seem to come with it for me...migranes...insomnia...worsen depression anxiety social anxiety and phobias...paranoia...ibs...blurry vision...etc..

its a horrible illness...it causes alot to lose so much in their lives...friends...family...work....etc..etc..

...and when people see you and you tell them you have been in the dessert without food an water for a few days, they say - oh that's nothing, we have been in the desert without food and drink plenty of times...it is no big deal. So you tell them but, in addition, I also have not slept for the past three days - so they reply..well my aunt's brother's nephew once did not sleep for three days and anyway for someone who supposedly has been walking in the desert for three days without food, drink or sleep ...you look GREAT!

...and when people see you and you tell them you have been in the dessert without food an water for a few days, they say - oh that's nothing, we have been in the desert without food and drink plenty of times...it is no big deal. So you tell them but, in addition, I also have not slept for the past three days - so they reply..well my aunt's brother's nephew once did not sleep for three days and anyway for someone who supposedly has been walking in the desert for three days without food, drink or sleep ...you look GREAT!

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Or, "Well I was walking in the dessert for 3 days with no food and water and I just took some vitamins/got acupuncture/did meditation [insert treatment of choice here] and I was just fine!"

Thanks Ocean for that synopsis from Dr Bell - o particluarly like this part in section 5

This isn't something that gets discussed much, but it drives me crazy. I always seem to have one more domiannt symptom which makes treatment really hard because they rotate - one month i think i need to see a neuro - the next its replaced by a burning desire for some gut testing as that takes over as the predominant symptom. So hard to get my own head around, let alone describe to someone else.

Not sure about the POTS being necessary for a diagnosis.

Justy.

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Yeah I agree about the POTS, although I also agree that if you have it it really keeps you off your feet a lot more than if you didn't. So just another element of the limiting aspects of this condition. I like his point about activity limitation. I don't think people really understand how little I can do compared to a healthy person, even on my best days.

At one point in my life, many years before becoming ill with ME, I did two full time jobs - 84 hours in all - one weekend nights, one 12 hour days. My partner was ill, and we needed the money. I worked, every Sunday night/Monday day, 24 hours straight. I tell people that now, I feel more exhausted, more ill, than I did after six months of that. It seems to hit home.

No matter what I say................. on a good day after a shower hair wash, bit of make up I look relatively normal, so no matter what I say..... what they see with their eyes influences their judgement of me and this illness, even if they only see me once a year.
I've been really rough for over a week. Where is it? in your head? back, stomach? they ask, I can't explain how ill I feel to them, how its all over, and then comes into the head, then the joints, then the bones, then the stomach, it goes on.
Thats why for me its the most frustrating illness.

[quote="Ocean, post: 278699, member: 4327] 5. And lastly I would emphasize the symptom severity fluctuation along with the variation of the worst symptom. The activity fluctuation may go from two hours a day in one month to four or five hours in another. But during this time different symptoms take the lead in being the most troublesome. Severe headaches for three weeks, followed by muscle pain for the next three. A month later the sore throat is there every day, and another month later the irritable bowel is acting up. Overall, all the symptoms seem to hang around, but they take turns leading the pack. It is the overall pattern of these symptoms that is important in making the diagnosis, not the most prominent symptom on a given day."[/quote]

so true. I think that is one of the big things which also helps to distinguish this illness from many other illnesses, its so inconsistant with its symptoms.
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When trying to describe this illness to others I either try to describe in one of two ways.

"Imagine you have the worst flu you ever had which has sent you to bed. Imagine how unwell you felt all over, imagine all the other symptoms you had with it, sore throat, headache, feeling feverish. That's me some days but worst as even with your worst flu, you probably still would of been able to get out of bed to get yourself food or drink if you wanted it.
Being in that flu like state is only ONE of the MANY ways I get this illness when it flares up when I over do things."

Another way I used to describe it when I used to get more symptoms was "Imagine someone who has MS, Alzheimers, arthritis everywhere, parkinsons disease, epilespy, allergies and the flu all at once. That's me and what the ME/CFS is like"

Thanks Ocean for that synopsis from Dr Bell - o particluarly like this part in section 5

This isn't something that gets discussed much, but it drives me crazy. I always seem to have one more domiannt symptom which makes treatment really hard because they rotate - one month i think i need to see a neuro - the next its replaced by a burning desire for some gut testing as that takes over as the predominant symptom. So hard to get my own head around, let alone describe to someone else.

Not sure about the POTS being necessary for a diagnosis.

Justy.

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David Bell said OI not speciically POTS, there are several different causes of OI eg NHM, orthostatic hypertension, narrowing of the pulse pressure etc. (all of what Dr David Bell is familiar with).

It would be uncommon in ME to not have any autonomic dysfunctions going on of some kind or another. (David Bell tends forus on those with ME people not general CFS as such so his patients would probalby all have OI. He followed the people from one of the ME outbreaks so would be aware of what is usually seen in ME) .

How do you, or would you, describe in a few sentences the symptoms of this illness to family and friends? I realize the presentation of ME/CFS differs somewhat in all of us, and that some symptoms may present strongly for some people while other symptoms present strongly for other people.